Spoiler alert: For those of you who are currently enrolled in the PF-02341066 trial and/or considering enrolling, please do not be discouraged by today’s post. The trial has been nothing short of miraculous for me and many others. I have always known that it was, however, not a cure for me, but rather a much needed ‘vacation’ from my cancer.
Monday was the day of my appointments in Boston. As I got dressed that morning, I contemplated fixing my little V pin to my shirt, in celebration of five years, but somehow it just didn’t feel right.
It’s generally a solo trip, but David came with me this time. Due to the fact that it was Patriot’s Day, traffic was a breeze, and we got to the hospital with plenty of time to spare for a cup of coffee. Dr. Shaw was prompt, and as she entered the exam room, I could sense that it wasn’t going to be good news. Had it been a book that I was reading, I would have marked the page, shut it, and walked away. Maybe later.
Not a book though, but life as I’ve come to know it (quick fact: as someone who is fifty and was diagnosed with cancer five years ago, I have now spent 10% of my life battling lung cancer).
So, cut to the chase, it is now apparent that my cancer is developing resistance to the PF-02341066.
There is no longer a single area of concern in my upper left lobe, but several, including one in my right lung. In addition, the pleural effusion which had been stable for five years has gotten slightly larger. I’ve scanned in a copy of the report: for those who are curious, if you click on the image you can see it full size. Radiologist’s speak, and it’s a wordy one. Quite the opposite of the ideal report, which would be short and sweet and use words like ‘unremarkable’.
As I left Alice’s (Dr. Shaw’s) office, I felt like Cinderella at the ball when the clock struck midnight. I had been living in this fantasy which included a future and I was really getting used to it. It hit me really, really hard.
However, after approximately 36 hours of feeling sorry for myself, I rallied. This was due in no small part to the fact that Alice called not once, but twice with updates on potential avenues for treatment. Once again we are at the very edge of what is available. I was describing it to Peter as being similar to trying to cross a fast moving stream on a path of stones, and he more aptly envisioned the stones as the backs of turtles: they too are likely in motion.
So, I will stay on 1066 as long as I am able. Hopefully that will be for at least several more cycles. I would then potentially enroll in a trial for a HSP-90 inhibitor (HSP-90 is crucial to several proteins which stimulate growth in cancer cells). Alternately, I might return to a more traditional chemo such as Alimta. Some of the other options we had once talked about, including a wedge resection or radio ablation, are no longer viable, as my BAC appears to be multi-focal once again.
Perhaps most exciting, is a new ALK inhibitor by Ariad that was announced at the AACR meetings. It is specifically tailored for ALK mutations that have become resistant to PF-1066, and it is reported to be even more potent. However, it is preclinical: not even in phase I yet. One of those swimming turtles.
So, I’m shopping for just the right glass slippers again (or, back in line for another miracle). And in the meantime, I’ve got to stay positive, be strong, get as much benefit out of each treatment as possible, and just hope that medical science is one step ahead of me.
Wish us all well.
life and breath: outliving lung cancer 